If you had to describe your PBC fatigue to someone, what does it feel like?
Fatigue with PBC can be debilitating. How would you describe it?
I’m tired most of the time and my
legs hurt all night long about every night. Brain fog is bad , it embarrasses me a lot , I’m afraid that my family will think I’m getting dementia. They really haven’t did any research. So they don’t understand.I hate that you’re having to deal with all of that, especially feeling like your family doesn’t really get it. And I definitely can see how the brain fog would be frustrating and make you self-conscious. Are your family members pretty supportive otherwise, or has that been difficult too? -Latoya (Team Member) no , I have no support. They don’t understand the disease and don’t even care.
Yes I did get a second opinion ..I worked in Healthcare for 40 yrs and knew not to stop with out some answers.
Having a healthcare background probably made it easier to recognize when it was time to seek another opinion. I'm glad you didn't just accept the uncertainty. How are you doing now? Did the second opinion help any? -Latoya (Team Member)
Fatigue is the biggest issue I have and trying to decide if PBC is something to be concerned with. I take uridsol for the condition and my lab work.is stable..seems like physicians dont seem to.be concerned about the diagnosis I had practically beg for a fibrosis stage the disease and got conflicting results from imaging exams ..
Having to push for answers and then receive conflicting information from different tests would leave anyone feeling uncertain about where things stand. Even when doctors say things are "stable," that doesn't necessarily ease the worry, especially when you're still dealing with significant fatigue. Have you thought about getting a second opinion? -Latoya (Team Member)
